February 5, 2012 — There arose some confusion about how much Haldol I was supposed to have given Emma when on Tuesday afternoon, January 31, Tess, our Hospice nurse, arrived to assess Emma’s condition – one milligram every hour as needed or two to three doses only and then call Hospice. Well, I did call Hospice (after eight doses) and I was told to give another dose.
That’s when the whole center of the stage collapsed, and I fell through, ending up with Stephen King’s “boys in the basement,” whence sprang forth into the spotlight the gargoyles of my subconscious.
I envisioned myself on Anderson Cooper 360 in drug overdose trial highlights along with Michael Jackson’s doctor. I only followed Dr. Patel’s prescribed dosage, the directions on the bottle, doing what I thought was best to ease Emma’s agitation and keep her as comfortable as possible.
Not taking the time to get out my soapbox, I simply stood my ground and launched into how because some people are doctors and nurses, they think they are smarter than everybody else – and they’re not – and therefore don’t think the layperson is intelligent enough to receive full information, like how many doses, specifically, of a drug to give, or how the drug works, its efficaciousness, the effects and the side effects.
“Dr. Patel wants to know exactly what Emma has been doing,” said Tess. I sat back in my chair, exasperated, and said I didn’t know what else to say; I’d already told everybody everything in detail.” I was burned out.
I believe I was doing a fine job at testing Tess’s patience. Tess is most compassionate. She is a very experienced nurse. She told me I had some choices: go back to the less effective Ativan; give two to three doses of the Haldol and then call Hospice should Emma show no improvement; stay up with her alone all night; or do nothing. I said I felt less supported than before; in fact, that I felt bereft.
Tess said she would double check with Dr. Patel and that either she or he would call me. No one called.
The next afternoon, Wednesday, February 1, I called our Hospice team manager, a nurse. She said that the instructions were to keep the dosage as is. “As is what?” I asked. “One milligram an hour as needed or two or three doses and then call?” The team manager said she would check with the doctor and call me back.
Awhile later she called and said that Dr. Patel had changed the order to five milligrams of Haldol twice a day, morning and night – “He doesn’t want you up all night” – and if Emma continues to be agitated, one milligram every hour, as needed. She told me I had been giving the medication correctly.
Meanwhile, I had been reading about Ativan and Haldol, particularly the latter, in the literature that came with the drug, online at WebMD and other places. These sources give you an overview; they are not explicit. This may be fine for the average layperson, but I don’t want to miss anything.
Late that afternoon, Dr. Patel phoned me. He said that he hoped that this increased dosage twice a day would keep her calm. He said we could give her Ativan, which has fewer side effects but is less effective. He said he could prescribe a new drug, but that since Emma’s system is already adapted to the Haldol, it is better to continue that rather than to give her a new medication and her body having to adapt to that. Without my asking, he gave me the explicit information I was seeking. He explained that once her body adapts more to the Haldol that the dry mouth side effect should subside. He explained how the drug works and related details. He said that as prescribed, I had no chance of overdosing her, unless she had fallen asleep and I was still trying to administer the drug. This, of course, I would not do; I would have fallen asleep by then, anyway.
After his call, I felt much better. Everything was OK. Dr. Patel is the best drug I could have.
He has a calming, centering effect on me. You may smile and go “Mmm-hmm,” but I will tell you that he is one of a kind, like my spiritual teacher friends – compassionate, intelligent, having a practical logic, and self-realized, setting an example towards which I strive – on my good days.
The team manager sent Nurse Mirabel (as I shall name her) that evening to assess Emma’s state. Nurse Mirabel is a tall, well-dressed, attractive, highly intelligent woman from Kenya. The first time I met her, a few months ago, when she told me where she was from, I recited, “I had a farm in Africa, at the foot of the Ngong Hills.” She lit up. She had never heard that opening line from Karen Blixen’s Out of Africa, but, “Ah, the ’Gong (as she pronounced them) Hills. They are beautiful. Yes. It makes me very homesick.” She is from Nairobi. We established a bond by that line. And I am very glad she is here. She is a people whisperer. She helped give Emma her first five-milligram dose of the Haldol – using the one-milligram dropper five times.
“She will fight you,” I said.
“Oh, no,” she said. “She will take it from me. I will have no problem. You just relax and let me do it. That is what I am here for. You are here twenty-four hours. You just rest while I am here.” She is the Dr. Patel of nurses. I thought I saw Emma smile when Nurse Mirabel administered the medication.
The next day, Thursday, February 2, Tess and Geri, my social worker/bereavement counselor, were here. This time there arose confusion in my mind about the ratio of milliliters to milligrams. Dr. Patel had told me and it was perfectly clear. Suddenly, it was not. I had to leave the room to clear my mind. Moreover, the pharmacy had sent a one-milligram dropper from which to administer the five-milligram dosage – and, well, we already know Emma hates the stuff. If she could, when she saw me coming at her with that dropper, she would get up and run. Fortunately, Tess had a two-and-a-half milliliter syringe in her car; two-and-a-half milliliters equal five milligrams. Trust me on this.
Tess said I should call sooner for help. Geri said, “Tell the nurse you want her to come out and assess Emma. She is not permitted to refuse.” Tess told me that since our Hospice took on the patients of a Hospice organization that went out of business a few months ago, she was visiting all her patients in the morning (she visits us once or twice a week) and therefore in the afternoon when it is time for our appointment, she is often sent out on emergencies – because emergencies tend to occur then. Now that I know, we can make our appointment earlier, she visiting us last, thus assuring she will be here. Once I know the other side of any situation, then we can take the best of both to reach a logical compromise somewhere in the middle.
I’m still not keen on getting on my hands and knees and begging an on-call nurse who has just demonstrated her uselessness, to come make an assessment: “Oh please, puhleeeze, puhleeeeeeeze come visit us now, in the middle of the night. Puhleeeeeze.”
I’ll just have to leave my ego in the wings and do it. Patients’ caregivers need patience. But, puhleeeze don’t be texting somebody while I’m trying to get details of a medical condition across to you.
– Coming up, our finale …
– Samantha Mozart